Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

HELP! Any success with sleep Apnea exercises?

Discussion in 'Sleep' started by Derek Conklin, Apr 15, 2015.

  1. Derek Conklin

    Derek Conklin Senior Member

    Messages:
    143
    Likes:
    319
    Yakima Washington
    Hi, has anybody here been helped with the new sleep apnea exercises?
    My sleep doctor said that my sleep apnea was the worst he has ever seen out of 30,000 cases
    that he has studied, and said that I could die at any time If I didn't use the cpap!
    In my sleep study, he said I stopped breathing over 160 times, and once stopped for over
    5 minutes, as the nurses got scared that my heart was going to stop and fail that night!
    I've tried 2 machines now and there is no possible way with my panic attacks and severe Cfs
    that I can use one!


    But I recently saw tons of youtube videos of people being completely cured of their anpea
    from doing special exercises that strengthen your throat muscles and tonge muscles, that
    keeps your tounge from falling back into your throat at night causing the breathing problem!
    There claiming it only takes 4 to 6 weeks of these daily exercises to cure the sleep apnea!
    They say that many are getting good results from this and getting rid of their cpap machine,
    that after time can cause damage to your lungs and heart ect.... I just started my first day,
    but was wondering if any one has tried these exercises and got help from them?
     
    AnnaDove and barbc56 like this.
  2. barbc56

    barbc56 Senior Member

    Messages:
    3,526
    Likes:
    4,123
    @Derek Conklin

    I am on a cpap. I don't have time atm, to give much imput, but you might try a search in the sleep forums.

    My understanding is that the exercises may have limited benefits, especially with the more severe forms of sleep apnea as well as central apnea.

    Barb
     
    Derek Conklin likes this.
  3. Derek Conklin

    Derek Conklin Senior Member

    Messages:
    143
    Likes:
    319
    Yakima Washington
    Thank you Barb!
     
    barbc56 likes this.
  4. deleder2k

    deleder2k Senior Member

    Messages:
    1,098
    Likes:
    4,692
    How are your tonsils? I had sleep apnea. Removed my tonsils and the problem went away.
     
    Derek Conklin likes this.
  5. Derek Conklin

    Derek Conklin Senior Member

    Messages:
    143
    Likes:
    319
    Yakima Washington
    Thanks for asking, my nose doctor that recently did a surgery to help my breathing( that didn't help) said that
    my tonsils and adenoids were so little that they were not a problem hindering my sleep apnea.
    Boy, I wish that was the case though! Thanks for writing!!
     
    deleder2k likes this.
  6. perchance dreamer

    perchance dreamer Senior Member

    Messages:
    1,175
    Likes:
    1,599
    I use a dental device for apnea, and it works fine and reduces the hypopnias to fewer than 5 an hour. My case is mild, though, and I don't think the dental devices are enough for severe cases. Maybe that will change someday.

    Here's a good web site for CPAP alternatives:

    http://www.ihatecpap.com/
     
    Derek Conklin likes this.
  7. South

    South Senior Member

    Messages:
    466
    Likes:
    447
    Southeastern United States
    Just a small thought - (these help my husband) the "nose strips" products that are little sticky strips you stick on your nose to mechanically hold your nostrils more open all night. I know, they don't prevent the tongue/mouth problem, but they might still help:

    If you start off sleeping on your side, avoiding the problem of the tongue falling into the back of the throat, but then while asleep end up sleeping on your back, which aggravates the tongue falling into back of throat, you may want to try these little nose strips. Reason being, sometimes the reason people are turning over onto their back while asleep is the body trying to get more air due to the nose being slightly stuffy. The nose strips help prevent nose from feeling stuffy.

    (Also, products that are nose spray stuff, sold over the counter in the US, that unclogs the nose for about 8 hours, are helpful for this issue too, but can be habit forming leading to rebound nose stuffyness. Hence my husband's preference for the strips instead of sprays)

    One brand name of these strips is "breathe right".
     
    Derek Conklin likes this.
  8. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Messages:
    938
    Likes:
    3,879
    The only thing that works for severe sleep apnea is CPAP and BiPAP, everything else offers only minor improvement, which is only helpful for those with mild sleep apnea.

    So, you've got to figure out how to make it work.

    Sometimes if you find it difficult to breathe with CPAP, and you are anxiety prone, it can help to address the difficulty breathing with CPAP on.

    Do you have difficulty moving air in and out of your nose? If so, try the following, one at a time, in this order.
    1. Breathe Right nasal strips, put one on, then try your CPAP, if that's not good enough, try
    2. Nasal steroid spray, if that's not good enough,
    3. Ask for an Rx for an heated humidifier, when you use this the warm moist air will gently steam open your nasal passages within 5 minutes allowing air to move freely through your nose. The only down side to this is that you will need to dry your mask and tubing every day and wash and disinfect it once per week, disinfecting it involves soaking it in either a disinfectant made for CPAP equipment, or vinegar and water for 15 minutes, rinsing it, then drying it.

    If you do not have difficulty moving air through your nose, but have difficulty exhaling with CPAP on, then a trial of BiPAP may help. BiPAP has lower air pressure when exhaling than when inhaling. This makes it easier to exhale and can make it much more tolerable.

    If neither of these things is a problem, then a psychotherapist specializing in anxiety treatment may be able to help you to manage your anxiety well enough to be able to use CPAP.

    Patience and persistence in trying new approaches almost always wins when one is facing these CPAP challenges. The patience and persistence will have to come from you and you will have to engage your sleep specialist to help you through it which may be a challenge in itself.

    Good luck!
     
  9. Derek Conklin

    Derek Conklin Senior Member

    Messages:
    143
    Likes:
    319
    Yakima Washington
    :tulip::tulip:
    Thank you so much for your encouragement and help to keep trying! :tulip::tulip::tulip:
     
  10. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,177
    Ventura, CA
    If your sleep apnea is that severe you definitely want to be on CPAP. The exercises might help and eventually possibly making it safer to find different alternatives. For now making adjustments and finding a way to make the Cpap work is pretty vital. You definitely do run the risk of heart failure by not having it taken care of in the short term. Sleeping on your side and using a mouth piece to bring forward the lower jaw can also help. Did they say there was any obstructions like a receded lower jaw, over sized tongue, large adenoids/tonsils, etc?

    On top of the risk of dying in your sleep the issues of sleep deprivation due to apnea will make the Cfs, your hormones, blood sugar, muscle repair, the immune system, and a lot of other things in the body operating at a very sup par level. It is something that is definitely a fore front in the path to any kind of recovery, or for your general health as a whole.
     
    Last edited: Apr 16, 2015
    Derek Conklin and South like this.
  11. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    Messages:
    3,763
    Likes:
    4,842
    WA, USA
    also call your sleep center or respiratory therapist and make sure the machine is set right and the machine and the mask are the correct ones for you. Unless you need kid size, there are lots of mask options. And there are different machine settings and types of machines, too. Describe the exact problem(s) you are having, and they will know what to do.

    CPAP/BiPAP centers are notorious for not providing good support (for instance, not calling you back) once you are set up with a machine, so bug them a lot if you need to. Call your actual doctor's office for backup if you are not getting the help you need.

    If adjustments are needed, you might have to go in. I had success with getting people to come to me, but they were limited in what all they could do away from the center.

    ps, I don't have apnea, but I tried a machine for a bit to see whether it would help, because my sleep doc couldn't think of anything else to do and wanted to help somehow.
     
    Derek Conklin likes this.
  12. Derek Conklin

    Derek Conklin Senior Member

    Messages:
    143
    Likes:
    319
    Yakima Washington
    Hi Martial, thanks again for writing! My sleep doctor or nose and throat doctor never mentioned seeing a receded
    jaw or over sized tongue, but did mention that my adenoids and tonsils were very small and not creating a problem.
    My sleep doctor just took me off of the cpap today because of my high rate of severe anxiety, and is putting me on strait oxygen! I don't know if this was the right move. I'm just overwhelmed with it all, and am so down, that the idea of dying in my sleep sounds like a very sweet thing!
     
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,939
    Likes:
    22,118
    USA
    Derek, please do not lose hope and my husband tried several machines and masks for sleep apnea before finding the right one.

    Can you pinpoint the anxiety that is triggered by the machine? I am sorry if you already explained and I missed it.

    Also have you tried APAP instead of CPAP? There is also something called the Pillar Procedure but not sure if this would pertain to your case.
     
    Last edited: Apr 17, 2015
    WillowJ and Derek Conklin like this.
  14. Derek Conklin

    Derek Conklin Senior Member

    Messages:
    143
    Likes:
    319
    Yakima Washington
    Hi Ginger! Yes, Besides the intense anxiety that have 90% of the time laying in bed from the desperate feeling of a 1,000 bricks squishing every part of my body threw my mattress and box springs to the floor beneath, my anxiety is increased 10x because of the suffocating back pressure I feel with each breath! I found out that my machine is a apap machine, and is set at the lowest back pressure setting. But its not low enough for me not to freek out! The longest I have been able to wear it was 45 minutes, and after my lungs extremely hurt, and my heart rate increased!

    Today my sleep doctor saw me in his office, and with me crying and shaking, he realized that my Anxiety
    was to severe to use my cpap, and is putting me on strait oxygen with small nose tubes along with a senser
    I have to wear, to monitor my bodies oxygen levels! He also said I need to see a special anxiety doctor that
    can help prescribe stronger meds to nock me out and relax me enough to sleep with using the oxygen therapy!

    He also told me that my sleep anea is so, so very bad, that if I cant get these machines to work, that I could and very likely will die soon at night! Well I'm thinking about that today, and really, dying in my sleep sounds pretty sweet, as every minute of every day I want to die anyway! Then I wouldn't hurt my parents as much as committing
    suicide, which has been my wish to do for over 7 years now and have came very close to accomplishing it!:cry:
     
  15. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,939
    Likes:
    22,118
    USA
    It sounds like you have not been getting adequate or restorative sleep from this CPAP issue for years which is making everything worse. I am so sorry you are going through this!!! How do you feel about your sleep doctor's suggestion to try the straight oxygen and wear the sensor? I think it would be good data to see what your oxygen levels are at night.

    I am glad your doctor is taking this seriously (or at least it sounds like he is.) Would you be open to seeing the doctor that he recommended to address the anxiety and try a stronger sleep med? If you haven't already tried this (and if you are being referred to someone who actually specializes in this issue) then it has real potential and worth a try.

    Best wishes whatever you decide. :bouquet:
     
  16. Derek Conklin

    Derek Conklin Senior Member

    Messages:
    143
    Likes:
    319
    Yakima Washington
    :cry::tulip:
    Hi Ginger, sorry for not replying! I didn't get a notice that I had a new message here!
    Thank you again for your caring encouragement! :tulip:
    I'm using oxygen now, but don't think it is helping my severe sleep apnea at all! Next week they are suppose
    to be bringing me a oxygen monitor to use! My sleep doctor it between life or death to get to a Anxiety Specialist
    that can put on something to keep me knocked out all night so my CPAP machine can work! I just cant find any sleep/ anxiety doctor in my town, and Seattle is the only place I could probably find some one, but don't have the
    gas money to go that far! I'm very discouraged about this, and don't know what to do! :cry:
     

See more popular forum discussions.

Share This Page